Sharing my story for the benefit of others. I have benefited from others' stories so I want to share mine.

Thursday, January 24, 2013

Moebius Syndrome Awareness Day 2013

Today is Moebius Syndrome Awareness Day (MSAD). My kids and I will be wearing our MSAD shirts that I purchased at a very nice price from The Fresh Project (http://www.thefreshproject.com/collections/moebius). I will be doing a Moebius presentation in a preschool classroom where Luke spends some time next week. I didn't have a nurse last night and I desperately need sleep. The above picture comes from a fellow Moebius mom. Very cute! One of the sayings for Moebius Syndrome is "We smile from our hearts". I would ask that you please wear purple to support Luke and post a picture of you wearing purple on Facebook and tag me so that I can show Luke the people that are supporting him. I don't feel as on top of Moebius Syndrome Awareness Day this year.

It has been quite a stressful past few weeks. Hopefully I will get around to blogging but basically our nursing days after Luke had a minor surgery (if surgery can be minor) our nursing company called to say there was a problem with our insurance and they would be dropping our case if I didn't figure it out in two weeks. I spend a week and a half on the phone and finally realized that is the way it is. During this time I also had 4 nights, 3 right in a row and the 3rd unexpected with no nurse. Consequently I was exhausted and got a little sick and Kevin had to unexpectedly stay home from work . On an up note we found another nursing company that thinks they can staff us. And now this is one of two nights that I will not have a nurse in the next five. Thus, I am not feeling on top of my game at the moment.

However, you may wonder what exactly is Moebius Syndrome. Well here it is...

Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally.

Other cranial nerves may be affected, especially the 3rd, 4th, 5th, 9th, 10th and 12th. There may be skeletal involvement causing hand/feet anomalies and/or club feet. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength may also be present. Approximately 30% of children with Moebius syndrome are on the autism spectrum.

Symptoms May Include:

Lack of facial expression; inability to smile

Feeding, swallowing and choking problems

Keeping head back to swallow

Eye sensitivity due to inability to squint

Motor delays due to upper body weakness

Absence of lateral eye movement

Absence of blinking

Strabismus (crossed eyes)

Drooling

High palate

Short or deformed tongue

Limited movement of tongue

Submucous cleft palate

Dental problems

Hearing impairment

Articulation / speech disorders

Minor mid-line anomalies

Club feet

Hand/feet deformities

Although they may crawl and walk later, most children with Moebius Syndrome eventually catch up. Speech problems often respond to therapy, but may persist due to impaired mobility of the tongue and/or mouth. As children get older, the lack of facial expression and an inability to smile may become the dominant visible symptoms. Moebius Syndrome is sometimes but usually infrequently, accompanied by Pierre Robin Syndrome and Poland's Anomaly.

This is taken from http://www.moebiussyndrome.com

One common misconception, mainly due to the lack of facial expression is that people with Moebius have lower cognitive abilities. However, most people with Moebius have normal intelligence We think that Luke has above average intelligence but we could be a little bit biased. ;)

Luke does not have facial expression, is not able to eat by mouth, has gross and fine motor delays, no lateral eye movement, drools a lot, high palate, short tongue, and club feet. Not on this list are his low tone, inability to breathe adequately while sleeping, hypoventilation and central sleep apnea which are treated by him getting a trach at 3 weeks and using a ventilator while sleeping to keep him breathing adequately.

Luke is a great little guy. He loves people and likes to get everyone in the room's approval when he has built something with blocks or done something he thinks is praiseworthy. He loves to read and can spend all day going through books and being read too. He has started going to school this past fall and he really likes it. He has been growing developmentally since he started which has been great to see. Luke also really enjoys playing games and puzzles on his iPad. He communicates with sign language and an app on his iPad. He even babbles in sign language. He likes trees and most things in nature. I am hoping that as Luke's gets older and his breathing improves that we can take more vacations and immerse him in nature. Luke is not a fan of anything having to do with doctors. His least favorite things are the things that do not hurt: weight, height, temperature, ect... Maybe its just the principal of it for him. He has had enough of people doing things to him. We try to give him choices whenever we can to counter act all the things we do to him for his health that he doesn't have a choice about. For all of his health issues he is a great little boy that goes with the flow most of the time and captures the hearts of the people around him.

To learn more about Moebius Syndrome and read the stories of other Moebius people visit: